Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice

Abstract

PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs' perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems.

“I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability

“…However, the sense of feeling obliged to continue to please the deceased person was not replicated. Participants reported using mementoes, such as photographs of the deceased, as helpful which supports previous findings from a carer's perspective that personal mementoes allowed PWLD to feel connected to the deceased (Gray & Abendroth, 2016).…”

“…Difficulty recruiting PWLD in research has been well documented (Cameron & Murphy, 2007) and is further confounded by sensitive topics. Previous research has focused on carers' perceptions, citing "restricted access" (Clute & Kobayashi, 2012) or the idea that carers would be a "more reliable source" (Gray & Abendroth, 2016), which silences PWLD. Research that has recruited PWLD has acknowledged the role "gatekeepers" have had in facilitating recruitment (McEvoy et al, 2012;McRitchie, McKenzie, Quayle, Harlin, & Neumann, 2014) which may have biased the sample.…”

“…Raji, Hollins, and Drinnan (2003) interviewed funeral directors and religious group representatives who described a lack of involvement with PWLD, yet felt unable to intervene. Funeral attendance can help PWLD accept the reality of loss (Gilrane-McGarry & Taggart, 2007), express their grief and recall positive memories of the deceased (Gray & Abendroth, 2016). Funerals have also been found to offer concrete finality and facilitate continuing bonds with the deceased (Klass, Silverman, & Nickman, 1996;Morgan & McEvoy, 2014).…”

A matter of life and death: knowledge about the body and concept of death in adults with intellectual disabilities

“…However, the assumption that adults with ID have no concept of death and therefore are unable to grieve, has been discredited, and it is now widely accepted that an incomplete understanding of death is not necessarily a barrier to experiencing grief (Bihm & Elliott, ; Harper & Wadsworth, ; McEvoy et al ; Oswin, ). Moreover, struggling to understand death as a concept may play a significant role in exacerbating or prolonging grief (Blackman, ; Brickell & Munir, ; Clute, ; McEvoy et al ; Read & Papakosta‐Harvey, ), as understanding the concept of death is an important component of the bereavement processes (Blackman, ; Gray & Abendroth, ; McEvoy et al , ).…”

‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges

“…It is now widely accepted that although adults with ID have an incomplete understanding of death, it is not necessarily a barrier to experiencing grief (Gray and Abendroth, 2016; McEvoy et al , 2002). Furthermore, people with ID are at increased risk of emotional and behavioural problems following bereavement.…”